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Work and vasospasm (prinzmetal)

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A question for everyone. How do you work with this disease? We are/were thinking of selling our business where I work part-time at home. Now that my symptoms are so bad and thinking of my history with this problem how am I going to get even a part time job outside the home. What do others do? Disability? Thanks for your input in this difficult subject. Judy

16 replies

Hello Judy
This is such an excellent question! It is one that's been pondered by all heart patients (can I keep working? when can I go back to work? what if I can no longer work?) I've met women who recovered beautifully and returned to a busy and productive career just fine after their cardiac events, and others who were unable to resume their work at all. Every person is different, every cardiac diagnosis is different, and every work situation is different - only you can figure out what is right for you and for your family and, most importantly, for your health.

After three months off work following my heart attack, I tried going back in August (half days only to start). I was very happy about going back to the job I love because to me it felt like one more step closer to feeling "normal" again, which I had not felt since my heart attack. But I (and alas all my co-workers!) very quickly realized that I was somehow just no longer able to function in my high-pressure, deadline-juggling, PR job in any fashion.

I somehow hung on, struggling more and more each day, for a whole month, absolutely beside myself with worry and anxiety at the loss of even the most basic functional skills, and now fighting off worsening symptoms like chest pains and shortness of breath. When my doctor ordered me off work in September, I was devastated. I'm now on extended medical leave. However, I believe that this time off is a gift - a gift to myself and to my heart and to my whole body. My only job now is to get healthier. And there are so many things I AM able to do - I just have to pace myself and pay attention!

A while back, there was an excellent topic here called "Let's Talk About Work" that you might find interesting: http://www.inspire.com/groups/womenheart/discussion/lets-talk-about-work/

Good luck and keep us posted....
XOXOXO

Dear Judy...I think a lot depends on what your job is, and what hours you work. I am in radio, and was forced to go part-time back in 2005. Thank's to very dependable automation systems, I am able to cut shows for two stations, (there are five stations in the building), plus produce commercials, and record "on-hold" messages, and I only have to work 2 to 3 hours a day. I still do live broadcasts (in the field and in studio) when necessary, but I know my health has to come first. I'm sure it's hard in your situation when it is your own business, but go with how you feel. Don't push yourself....it's not worth it in the end. Part-time employment is a good option if finances allow. Good luck to you!
Carolyn

Sadly I can no longer work at all, and am retired at the age of 55 on grounds of ill health and I'm considered disabled.

I tried to work during the first year after my heart attack, but found it very difficult and exhausting and had frequent hospital admissions with angina. I actually think I may have had a second heart attack which was not diagnosed as my condition worsened dramatically about a year later. Since then I have been unable to work, or even cope with the household chores due to chronic refractory angina.

Lynne

I have worked for this past year since my diagnosis with Prinzmetal's. I am not able to go as long or to juggle as many things as I did before, but I seem to be managing. For a few months I doubted whether I would be able to stay with my position as an administrator at an assisted living facility. There is huge responsibility and a great deal of pressure in my job, but I really love it and I wanted to make it work. ( I am 48 and I cannot imagine what I would do with myself not working.)For months, I had to come home for a couple of hours in the middle of the day to rest and then return to work. I kept odd hours, but I was able to have some flexibility. You might find that you need that option until you figure out your triggers and what meds will work best for you. Ultimately, the 12000MG of L arginine is what has made me feel the best. (I am part of the study at Jewish Hospital in Cicinnati, OH) I keep my fast acting nitro handy, but I am doing well. I have not had an episode that put me to bed since August. I did have them almost monthly from Sept 07 until January or so. It would take up to a week to get back on my feet. So, don't lose hope. Many of us are able to find a balance between work and prinzmetal's. Hopefully, yours will allow that for you.

I work part time from home and it's the perfect solution for me. I set my own hours, if I'm having a bad day, I don't work, if it's a so-so day, I work a little, good days I work as much as I can. I have the flexibility to do what I need because I'm my own boss. At the worst of my symptoms, I don't know what I would have done working outside of home. The down side of it is being home alone and symptomatic can be scary. Do what's best for you and your family, if you need to work, working at home can be the best of both worlds.
K

I had a heart attack in Jan. 07, and have had ongoing issues with angina attacks, ie prinzmetal's (my dr calls it another name) angina, but says it is the basically the same. Going back to work was something I had to do, and my cardio dr. felt it was ok, since they did not recognize the angina was there nor the fact that I still could possibly have pain off and on. That started the journey of figuring out the heart spasm/angina attack diagnosis, their reluctant adjustments of medications, since I kept going in and out of the ER with chest pain. All while working.... my co-workers had to call the ambulance once, and took me the ER once. They have been supportive in concern and caring, but it does effect how people perceive you as a leader ( I am a manager in a clothing store) I do get tired so much easier, tho it is not as bad as it was at the beginning. The memory thing is very challenging at times, of course worse the more tired I get. In my business, I am on my feet the whole time except for my 30 minute lunch, which my dr's don't want to count as exercise but it still exhausts me. After all this time, and adjustments, the last bad attack when I ended up in the ER and stayed overnight, a new cardiologist took me off of my betablocker to keep my bp from being too low, and lowered my Norvasc dose. Voila!!
The pain and attacks are so much better it is a miracle.
All of this is to say I think that meds can really make things better when they are the right level, but it takes being brave with your dr to keep trying for the right mix. They can make you feel like an idiot for not wanting to just accept how things are. Also, to whine a little, my career and perceived job performance has so been damaged by this heart disease and being foggy, tired, memory impaired it makes me literally cry sometimes..... I just wish that people, even those who care, could just walk a tired step or two in our bodies sometimes.

I am one of the lucky ones, I guess. I was diagnosed at age 41, six years ago, and I have continued to work full-time ever since. I generally don't have symptoms, and do everything I always did.

I hope all of you can get your smyptoms resolved.

Lisa

Hi Nikki333,
I have been working full-time with no more than two weeks total off since I started having symptoms. Part of that is because for 2 years I was told it was anxiety, GERD, etc. Only a few times have my symptoms been debilitating and then only for a few days. Got an official diagnosis in June of this year, finally got on the right meds (YAY! Changed my life--be patient, it will happen for you too) and rarely have symptoms.

I do struggle with having to use my Nitro spray at work, though. If I am having symptoms and they are mild, I will usually tough it out until I get home (never had a heart attack, thank the Lord) because many of my co-workers don't know about my condition. They wouldn't understand--I'm 30 and "look" like I'm in perfect health. Plus I don't have an office to hide in while I get pummeled by the Nitro.

I'm lucky. No heart attacks and now on the right meds. Good luck to you and hopefully you can get some sense of your old life back.

Sarah

What is prinzmetal's? I'll look on line, but I had a Spontaneous Cardiac Artery Dissection (which resulted in a heart attack) in Feb. 05... since then I've been in the hospital several times with angina... I just came home this past friday, after having a Cath done to determine the cause... no blockage, no heart attack... just chest pain... it seems to be getting worse over the years...
I just started my job in June, and have been hospitalized twice during that time... once a co-worker brought me to the hospital... I am sitting here in my office feeling like my leadership may be in question, but I'm plugging away trying to hold it together. I'm a grant development specialist at Cornell University, and it's a new position, so I don't want them to think that I can't handle it... I need the health insurance at minimum, and I really want to make this work... my cardiologist has always treated me like I am overreacting or imagining the angina and has never mentioned prinzmetal's... nor have me on any drugs other than Niacin, Fish Oil, and Aspirin. I took Plavix for three years... and Lipitor and I didn't not do well, so they took me off that too.
Thanks for any advice and info... and I offer support to any and all of us who are coping with "keeping face and heart" and work.

Athena

I have my MI caused by a spasm right after I turned 38. It took about 10 weeks to get the medication right. I was hospitalized 2 more times. Everytime they aded a new medication after a spasm the hsopitalized me since I have such low blood pressure. I am on imdur, cardizem and the nitropatch. I was working as a Project manager in the IT department at a bank, but my degree is n engineering and I really hate project management so I had my doctor write that I could only return to that part time. Once my boss saw that he realized I couldn't act as a Project manager if I wasn't full time so I got my dream job as a programmer. I am out sick a lot. I also have meniere's disease which is a balance disorder. I am covered by my 2 illnesses by the Family Medical leave Act, I think that's what it's called, so I am able to miss 12 weeks a year if it is due to one of my medical conditions and they can't hold it against me, though they seem to, by saying things like I bring the morale of the team down. I still struggle with staying home when I am really sick, I ended up having to go to the ER for a sinus infection the Saturday before last because I didn't want to miss work, then it got so bad and my GP refused to treat someone with so many health conditions as myself. so it's a struggle, but luckily my mind is still working so I am still able to work. It is tough because as mentioned above I don't look sick. I am the ideal weight and exercise when I am able. Luckily as a programmer I work mostly by myself and I have an office door that I can close.

Good luck. I agree it is a struggle, but I am going to keep doing it and hope it gets easier.

Sandy A

Hi Athena
I just want to share my case with you.

I also had dissection of the coronary artery this January. It's been 10 months since the event and I struggled with chest pain for six months, in and out of ER with no answers. It was very very frustrating.

I saw this intergrative medicine doctor (MD who practice both eastern and western medicine) and he recommended chiropractic adjustment. Funny enough, I am a chiropractor myself. Anyway, after thoracic adjustment (upper back), the symptoms are completly gone. Whenever the chest pain comes back, I get adjusted and it immediately takes care of it.

Now, I cannot say your problem is structural or nerve related like mine, but if your cardiologist says it's not your heart related after all the tests (which was my case after exhaustive testing), it's something to think about.

I am so thankful I found my answer to my chest pain and most of the times, I even forget I had MI this year. I hope you find your answer soon.

Stephanie

Thanks Stephanie, very facinating... May I ask what artery was your dissection in. Those of us with SCAD have been told, and the research states, that this is very rare... The literature review that I read, stated something like 260 documented cases since 1960's... yet on this sight alone I've actually shared words with at least two others, and read words of several others.

I got some interesting news...yesterday. I have been hearing alot on this sight about spasms... and I thought that the symptoms described sound like mine... and I even posted an entry seeking more info. Well, I was just hospitalized last thurs/friday for chest pain, and two weeks before as well. They sent me home stating to follow up with my Cardiologist. Well, I had a catheritization done this last time, and they drugged me pretty well, so I don't remember most of it. The hospital technician who performed it spoke to my friend, who was waiting in the waiting room, and told HER that I had a coronary artery spasm while in the cath... I personally was never told this. My friend left the hospital after the procedure, and she figured that I would also be told. I was not. I was discharged and this was never disclosed to me. I was only instructed to follow up with my Primary Doctor... who has since called ME to make an appointment.
How can the medical field be so busy as to not transfer this knowledge... this information was not transfered beyond my friend and written somewhere in the chart... but not actually disclosed to me by the discharging doctor?
Certainly, traditional medicine is failing, and I would love the have the confidence in alternative medicine...
Lastly, my cardiologist has always treated me like I'm a whining female, hospitalized at least once a year since my dissection, and they've never expressed any interest in exploring what could be happening... yet on this site I read about spasms, and other sources of possibilities. I've learned more from this site than I have the "professionals"... I am firing my cardiologist! My first visit to them after my dissection, they stated... "I'm sorry, you are the one with the dissection I heard about... I'm not prepared for this meeting...I've not read your file and I don't know anything about dissection... and they scheduled a next followup a month later... and still no interest when I arrive. 3.5 years later... they are fired! Now I'm on the search for a different experience... So what is intergrated medicine? Maybe I'll look in this direction. I've also read on this site that many patients have gone to the Mayo Clinic... not sure how to do this, but one step at a time I guess. Thank to all of you for sharing all of your information.

Athena

Hi Athena

I had LAD (Left Anterior Decending Artery) dissection which is also known as a "widow maker". Most common artery to be involved and the most fatal, I read.

Yes, I also read that SCAD is very very rare, but at this site, I have met many ladies with same problems which I found extremely helpful.

I read the spasm of the arteries during the cath procedure is very common. I also found that as lucky as I am to find awesome doctors here in Toronto who take me seriously everytime, they also hesitate to tell me everything. I am a chiropractor and with my educational background, I am able to understand medical issues, but I found they hold back some "critical" information. My doctor told me 6 months later that I had a high chance of getting sudden cardiac rest after the cath procedure and that is why they kept me in the hospital for 10 days after the procedure. Now, that is kind of critical information to let patients know, don't you think?

I believe they didn't tell me such information because they don't want me to worry about it. Your heart reacts so closely to your emotions, no need to upset you or worry you I think. I found most of the cardiologists like that. Having said that, if you find your doctors don't take you seriously, then find a new one. It is so so very important for you to meet the right doctor.

Keep searching for your answer. I hope you find your answer soon.

Stephanie

Hi Athenak,
I would most definately look into what was told to your friend and why it was not told to YOU. I am also curious as to if they gave you the ergovine to see if it would bring on the spasm. That is what I had done and the spasm came and Nitro immediately opened me back up. At last after so long I had my diagnosis. I then went to the Prinzmetal Study in Cincinnati and was tested and found out that I was actually born without the genes needed to produce Nitric Oxide and started on the L-arginine. I would recommend you speak to your heart doctor, family doctor or whoever and make them give you some answers about that test, they should have told you and not just your friend anyway. Sadly many doctors still do not take spasms and variant angina seriously.
I would also recommend that you either go to the Jewish Hospital in Cincinnati or have your doctor take your bloodwork and just send it there, many who don't live close have done that just to be able to have a definate answer. It is all free. With all the testing over the last couple years I have never paid a penny.

Please don't delay, there are medicines that can help. Mine had gotten so bad before I was finally diagnosed I was close to death.

If you would like anymore information or would just like to talk feel free to write me. It is a scary disease. I too am looking to sign up for disability, I just cannot function at a job anymore. The main problem I have read in the SSD information is that they won't cover the problem if you have Prinzmetal but no blockage which is so silly. People are having heart attacks and dying all the time with this and it is because the spasm shuts off blood to the heart, makes no difference if you have blockage or not. Especially since with blockage there is somethings you can do about it including stents.

I was amazed how differently my husband was handled when he complained of chest pains than how I was, I was not taken seriously at all, it was told that I was emotion, had GERD, going through the change, and so on.

You must demand good care, it is your right to have that information. I am behind you all the way and will help you any way I can.

Take care and keep in touch,
Indiana Dee Marie
doubledmarie0713@hotmail.com

Hi Stephanie,
So, if Spasm is common during cath, could this have just been a common spasm, vs. a prinzmetal? Or could it be that it is common for those who have prinzmetal, to have a spasm during cath...just seeking clarification.
I'm meeting with my Primary Doctor next thursday, and I'm seeking her help in referring me to a different cardiologist...
I appreciate all of the information and advice... I started a new job in June, and I've been hospitalized twice now, and I worry that they are questioning my ability to remain focused! I'm trying to present confidence in my health... but it gets difficult...

Thanks again,
Athena

Hello Indiana Dee Marie,
Thanks for the very informative response. I meet with my Primary (because I don't trust my cardiologist... they've seen me for 3.5 years and have not been proactive at all! more patronizing than anything else...to busy to really care) I will talk with her about the info you gave me, and especially get specific info from the testing that was done.
I'll let you know what I find out, and I can relate to the workplace dispair, because I started a new job in JUne and have been hospitalized twice now, and I know they are walking on pins and needles worried it might happen "on their watch", and I just want to be confident in what I'm up against.
Thank you for such an informative response, and I appreciate every word!
Athena

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